Alberta aunt faces fetal alcohol spectrum diagnosis loophole

Rita can’t get her niece tested because child's mother didn’t declare she was using while pregnant

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An Alberta aunt believes her niece J (pictured) has FASD, but she can’t get the child tested for it.

By:Jeremy SimesFor Metro Published on

Rita just wants proper care for her niece who’s likely suffering from fetal alcohol spectrum disorder, but she’s unable to get the young girl tested.

Rita — who Metro won’t identify as her niece, J, is under the ward of the government — said she can’t get an FASD test from Alberta Health Services because J’s mom didn’t disclosed she was using drugs and alcohol while pregnant.

But Rita said all the signs of FASD are there, according to what a school psychologist told her.

“The psychologist strongly recommended that we had her tested for fetal alcohol syndrome because she has all the signs and symptoms of it,” she said. “They refuse to test her and I am in shock that this is what happens.”

According to Alberta Health Services (AHS), J isn’t eligible for a test because maternal alcohol use during pregnancy wasn’t confirmed.

“Children with FASD have complex developmental and behavioural characteristics and may present in similar ways as children with other diagnosis,” the health authority said in a statement. “Therefore, documented evidence of prenatal alcohol exposure must be present for a diagnosis.”

Rita said J was apprehended when she turned 4 months and returned to the parents at one year old, when social workers determined her mom was using. Rita received J when she turned 5. She said J’s mom can sue if J is diagnosed without the declaration.

Rita, who has full custody of J, believes J’s mom was using while pregnant but, according to paperwork, it’s unknown if J’s mom was using.

The problem, Rita said, is J won’t be getting the proper care because there’s no official diagnosis.

“There’s nothing else we can do,” she said. “Can you imagine the number of kids and adults out there who are suffering from this out there but could never get the diagnosis because of this requirement?”

J will put into a separate tested for mental issues and neurological issues.

“It upsets me because it all comes down to her possibly having fetal alcohol syndrome,” she said. “That’s like telling someone, ‘You may have cancer, but we’re going to test you for a common cold instead.”

And without an FASD diagnosis, Rita will have to foot some hefty respite bills — if she doesn’t get tested for FASD it’ll cost her $34 per hour.

“She has a right and deserves to be able to get the right care and function properly when she becomes an adult.”